In the UK, current policies and services for people with mental disorders, including those with intellectual disabilities (ID), presume that these men and women can, do, and should, make decisions for themselves. The new Mental Capacity Act (England and Wales) 2005 (MCA) sets this presumption into statute, and codifies how decisions relating to health and welfare should be made for those adults judged unable to make one or more such decisions autonomously. The MCA uses a procedural checklist to guide this (...) process of substitute decision-making. The personal experiences of providing direct support to seven men and women with ID living in residential care, however, showed that substitute decision-making took two forms, depending on the type of decision to be made. The first process, ‘strategic substitute decision-making’, paralleled the MCA’s legal and ethical framework, whilst the second process, ‘relational substitute decision-making’, was markedly different from these statutory procedures. In this setting, ‘relational substitute decision-making’ underpinned everyday personal and social interventions connected with residents’ daily living, and was situated within a framework of interpersonal and interdependent care relationships. The implications of these findings for residential services and the implementation of the MCA are discussed. (shrink)

There are two main ways of understanding the function of surrogate decision making in a legal context: the Best Interests Standard and the Substituted Judgment Standard. First, we will argue that the Best Interests Standard is difficult to apply to unconscious patients. Application is difficult regardless of whether they have ever been conscious. Second, we will argue that if we accept the least problematic explanation of how unconscious patients can have interests, we are also obliged to accept that (...) the Substituted Judgment Standard can be coherently applied to patients who have never been conscious at the same extent as the Best Interests Standard. We then argue that acknowledging this result is important in order to show patients respect. (shrink)

Health care decision making for patients without decisional capacity is ethically and legally challenging. Advance directives (living wills) have proved to be of limited usefulness in clinical practice. Therefore, academic attention should focus more on substitute decision making by the next of kin. In this article, we comparatively analyse the legal approaches to substitute medical decision making in England and Germany. Based on the current ethico-legal discourse in both countries, three aspects of (...) substitute decision making will be highlighted: (1) Should there be a legally predefined order of relatives who serve as health care proxies? (2) What should be the respective roles and decisional powers of patient-appointed versus court-appointed substitute decision-makers? (3) Which criteria should be determined by law to guide substitute decision-makers? (shrink)

Substitute decision-makers for severely disabled neonates who can be kept alive but who will require constant medical interventions and will die at the latest in their teens are faced with a difficult decision when trying to decide whether to keep the infant alive. By and large, the primary focus of their decision-making centers on what is in the best interests of the newborn. The best-interests criterion, in turn, is importantly conditioned by quality-of-life considerations. However, the (...) concept of quality of life is logically and ethically different for patients with a developing as opposed to a developed awareness. Unfortunately, this difference is ignored by current quality-of-life considerations, there are no quality-of-life measures that take this difference into account, and decision-making proceeds entirely without acknowledging this fact. This note outlines why this is a problem and why there is a need for a new set of tools that incorporates this distinction if the substitute decision-makers are to apply the best-interest criterion in a meaningful way. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which (...) decisions are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

According to what we propose to call “the competence model,” competence is a necessary condition for valid informed consent. If a person is not competent to make a treatment decision, the decision must be made by a substitute decision-maker on her behalf. Recent reports of various United Nations human rights bodies claim that article 12 of the Convention on the Rights of Persons with Disabilities involves a wholesale rejection of this model, regardless of whether the model (...) is based on a status, outcome, or functional approach to competence. The alleged rationale of this rejection is that denying persons the right to make their own treatment decisions based on an assessment of competence necessarily discriminates against persons with mental disorders. Based on a philosophical account of the nature of discrimination, we argue that a version of the competence model that combines supported decision-making with a functional approach to competence does not discriminate against persons with mental disorders. Furthermore, we argue that status- and outcome-based versions of the competence model are discriminatory. (shrink)

Introduction Substitute decision making on behalf of incapable patients is based on the ethical principle of ‘respect for autonomy’. This study was conducted to assess patients' wishes and preferences in terms of a substitute decision maker and determinants of such preferences. Methods The authors conducted a cross-sectional study and selected samples randomly from patients presenting at Farabi Eye Hospital clinics who were 18 years of age or older. Questionnaires were completed through interviews. Results 200 patients (...) between the ages of 18 and 83 years were interviewed. About 52% (N=105) were men and 73% (N=77) were married. Among married patients, the spouse was chosen as the substitute decision maker in only 51% of cases. Single men preferred their father first in 36% (N=9) of cases, while single girls chose their father in 5.6% (N=1) of cases and their most prevalent choice was other unmentioned people (33.3%, N=6). Most patients (93.5%) wished to be asked about their substitute decision maker when hospitalised. Conclusion The results of this study show that the people we usually consult for decisions concerning patient treatment are significantly different from the patients' preferred substitute decision makers. The authors suggest patients be allowed to choose their substitute decision maker while conscious. (shrink)

BackgroundJunior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors’ decision-making processes when treating people with dementia who have advance care directives, or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: their legal compliance and decision-making process related to treatment decisions; the factors influencing their clinical (...) decision-making; and the factors associated with accurate responses to one hypothetical vignette. MethodA cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: bacterial pneumonia; or suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette.ResultsOverall, 116 junior doctors responded. In Vignette 1, 58% of respondents selected the legally compliant option. Participants who chose the legally compliant option perceived ‘following patient wishes’ and ‘legal requirements to follow ACDs’ as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the ‘ACD is relevant in my decision-making process, but other factors are more relevant’. In Vignette 2, 72% of respondents indicated they would commence treatment and 18% selected they would not commence treatment.. Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario.ConclusionsThere are critical gaps in junior doctors’ compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors’ clinical decision-making and ensure compliance with the law is required. (shrink)

The standard by which we apply decision-making for those unable to do so for themselves is an important practical ethical issue with substantial implications for the treatment and welfare of such individuals. The approach to proxy or surrogate decision-making based upon substituted judgement is often seen as the ideal standard to aim for but suffers from a need to provide a clear account of how to determine the validity of the proxy's judgements. Proponents have responded to (...) this demand by providing the truth-conditions for the substituted judgement in terms of counterfactual reasoning using a possible worlds semantics. In this paper, I show how these underpinnings fail to support the substituted judgement approach as a reasonable standard for decision-making. Firstly, I show how this counterfactual element has been poorly interpreted. I then explain how various accounts have failed to reflect problems and limitations associated with providing an interpretation of their truth-conditions using counterfactuals. Finally, I argue that, even when we attend to the initial problems of providing a counterfactual analysis, it still deeply problematic as a means of determining the validity of substituted judgements for two main reasons. Firstly, making determinate judgements as to the truth-value of these judgements will often not be possible and, secondly, there is a strong requirement when interpreting many counterfactual claims to charitably accede to their being true. I conclude that substituted judgements, as interpreted through counterfactual reasoning and possible worlds semantics, do not therefore provide an adequate standard for surrogate decision-making. (shrink)

In this article we report findings from a qualitative study that explored how doctors and nurses in nursing homes describe professional collaboration around dying patients. The study also examined the consequences this can have for the life-prolonging treatment of patients and the care of them and their relatives. Nine doctors and 10 nurses from 10 Norwegian nursing homes were interviewed about their experience of decision-making processes on life-prolonging treatment and care. The findings reveal that the frameworks for the (...) professional collaboration and organization of physicians and nurses prevent patient treatment and care complying with ethical considerations and the law. These conditions have a challenging impact on the care of dying patients and their relatives. (shrink)

Patients who are incompetent need a surrogate decision maker to make treatment decisons on their behalf. One of the main ethical questions that arise in this context is what standard ought to govern such decision making. According to the Substituted Judgment Standard, a surrogate ought to make the decision that the patient would have made, had he or she been competent. Although this standard has sometimes been criticized on the grounds of being difficult to apply, it (...) has found wide appeal, since it it is alleged to protect incompetent patients? right to autonomy. The main purpose of the thesis is to evaluate SJS, from a conceptual and ethical perspective. It argues that the traditional formulation of SJS is seriously incomplete, and discusses alternative ways of completing it. Moreover, it questions the received view on how SJS should be morally justified, by offering arguments against the view that decision making in accordance with this standard extends the patient's opportunities for self-determination. Instead it suggests a virtue-ethical approach according to which the moral point of SJS-based decision making is not to protect the patient's interests, but to express respect for person. The thesis also critically assesses empirical studies according to which surrogates often fail to correctly predict patients? actual treatment preferences. It is shown that such results cannot, for a number of reasons, support the conclusion drawn that surrogates are ill-equipped to make decisions that comply with SJS. (shrink)

It has been argued by disability advocates that supported decision-making must replace surrogate, or substituted, decision-making for people with cognitive disabilities. From a moral perspective surrogate decision-making it is said to be an indefensible form of paternalism. At the heart of this argument against surrogate decision-making is the belief that such paternalistic action expresses something fundamentally disrespectful about those upon whom it is imposed: that they are inferior, deficient or child-like in some (...) way. Contrary to this widespread belief, I will argue that surrogate decision-making sometimes expresses more respect for people with life-long, ‘severe’ or ‘profound’ cognitive disabilities than does the adoption of supported decision-making.. Specifically, I argue that in some cases supported decision-making can arguably express that people with severe or profound cognitive disabilities lack equal moral value. I also argue that supported decision-making for people with profound cognitive disabilities can arguably express that they lack complex and rich inner lives. If our aim is to ensure our behaviour and practices express respect for people with life-long ‘severe’ or ‘profound’ cognitive disabilities, then sometimes surrogate rather than supportive decision-making will be a better option. (shrink)

People with cognitive impairments often have difficulties formulating, understanding, or articulating decisions that others judge reasonable. The frequent response shifts decision-making authority to substitutes through advance directives of the person or guardianship orders from a court. The Convention on the Rights of People with Disabilities defends supported decision-making as an alternative to such forms of supplanted decision-making. But supported decision-making raises both metaphysical questions—what is required for a decision to be the (...) person’s own?—and epistemological questions: how do we know what persons judge to be their good, when they have difficulty conceptualizing and articulating? It raises practical questions, too, such as protection against risks of exploitation. This article uses a non-discrimination account of legal personhood drawn from the CRPD to explore how common features of decisions employed by people without cognitive disabilities are important in supported decision-making too. These features include prostheses, guardrails, relationships, and social contexts. (shrink)

Families frequently act as substitute decisionmakers for their older members who suffer from diminished mental capacity to make and express their own medical choices. Substitute decisionmaking takes on particular ethical and legal urgency within the nursing home environment, especially when choices concern potential medical treatment near the end of the nursing home resident's life. This article examines current legal mechanisms in the United States that enable a family to make substitute medical decisions, the ethical underpinnings of those (...) mechanisms, and specific ethical and legal considerations implicated by their application to the nursing home setting. The article offers advice to nursing home professionals, including physicians, in working with families as substitute decisionmakers. (shrink)

Unrepresented patients are individuals who lack decision makingcapacity and have no family or friends to make medical decisions for them. This population is growing in number in the United States, particularly within emergency and intensive care settings. While some bioethical discussion has taken place in response to the question of who ought to make decisions for these patients, the issue of how surrogate medical decisions ought to be made for this population remains unexplored. In this paper, we argue that (...) standard applications of surrogate decision making principles in health care are not well suited to many unrepresented patients with long-term mental health diagnosis. We argue that when applied to this population, the substituted judgment standard, designed to preserve patient preferences and values, may lead to the exclusion of their preferences. We argue further that the application of the best interest standard runs the risk of leading to harmful cases of overtreatment or undertreatment. We offer an alternative interpretation of the best interest principle that is better able to promote the well-being of unrepresented patients, especially for those who lack capacity because of mental disorders. This alternative is based on the practices and principles of harm reduction and includes three components: emphasis on considering the expressed preferences of unrepresented patients, a focus on reducing harm as well as the delivery of clinical benefits, and a recognition of the importance of promoting trust. (shrink)

Incompetent patients need to have someone else make decisions on their behalf. According to the Substituted Judgment Standard the surrogate decision maker ought to make the decision that the patient would have made, had he or she been competent. Objections have been raised against this traditional construal of the standard on the grounds that it involves flawed counterfactual reasoning, and amendments have been suggested within the framework of possible worlds semantics. The paper shows that while this approach may (...) circumvent the alleged problem, the way it has so far been elaborated reflects insufficient understanding of the moral underpinnings of the idea of substituted judgment. Proper recognition of these moral underpinnings has potentially far-reaching implications for our normative assumptions about accuracy and objectivity in surrogate decision making. (shrink)

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. In this (...) essay, we discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient. (shrink)

When a patient lacks decision-making capacity, then according to standard clinical ethics practice in the United States, the health care team should seek guidance from a surrogate decision-maker, either previously selected by the patient or appointed by the courts. If there are no surrogates willing or able to exercise substituted judgment, then the team is to choose interventions that promote a patient’s best interests. We argue that, even when there is input from a surrogate, patient preferences should (...) be an additional source of guidance for decisions about patients who lack decision-making capacity. (shrink)

How shall we decide for others who cannot decide for themselves? And who—or what, in the case of artificial intelligence — should make the decision? The present issue of the journal tackles several interrelated topics, many of them having to do with surrogate decision making. For example, the feature article by Jardas et al 1 explores the potential use of artificial intelligence to predict incapacitated patients’ likely treatment preferences based on their sociodemographic characteristics, raising questions about the (...) means by which we come to decide for others. And a clinical ethics round table led by Wilkinson and Pillay2 examines the case of a premature baby on life support whose primary surrogate is herself incapacitated. Together, these examples force us to think more deeply about the meaning and significance of taken-for-granted concepts: respect for autonomy, substituted judgement, best interests. We’ll consider the baby first and then turn to AI. “Baby T” is a critically ill newborn delivered prematurely by emergency caesarean section. The mother had entered into a surrogacy arrangement with a same-sex male couple, the intended parents, who were to take over the baby’s care after birth—just as soon as a formal parental order could be obtained through the court. Until then, the birth mother, who had used her own eggs to conceive Baby T along with sperm from an unidentified donor, would have legal and ethical responsibility to decide about the baby’s care. Unfortunately, she too was in critical condition, having fallen unconscious prior to delivery due to a sudden brain haemorrhage. She remained unconscious, and thus incapacitated, during a crucial period in which time-sensitive decisions about Baby T’s care needed to be made, including whether to continue life support. Given the mother’s incapacity, who should …. (shrink)

Cette étude de cas aborde les défis de la prise de décision en fin de vie dans la pratique, en se concentrant sur l’équilibre délicat entre le paternalisme médical, la prise de décision partagée et les droits des décideurs de substitution. La famille a d’abord du mal à saisir la gravité de l’état de santé de l’être cher, mais un moment charnière lors de la réunion sur les objectifs de soins apporte une clarté soudaine. Ce cas explore la pertinence et (...) les implications de la pratique du non-dissentiment éclairé. Cette analyse suggère que cette pratique est inappropriée à moins qu’il n’y ait des preuves irréfutables de paralysie de la décision. Des stratégies pratiques sont proposées pour faciliter l’accompagnement de la mort dans la compassion, tout en tenant compte des contraintes de l’urgence clinique. (shrink)

In this comparative survey of 191 Egyptian and 92 U.S. executives, we explore the relationship between national culture and ethical decision-making within the context of business. Using Reidenbach and Robin’s (1988) multi-criteria ethics instrument, we examine how differences on two of Hofstede’s national culture dimensions, individualism/collectivism, and power distance, are related to the manner in which business practitioners make ethical decisions. Egypt and the U.S. provide an interesting comparison because of the extreme differences in their economies and related (...) business development. Our results indicate that respondents from the U.S, individualistic and low in power distance, were likely to view the decision making outcome in ethics scenarios as more unethical than the more collectivistic and high power distance Egyptians, when applying ethical criteria based on justice, utilitarianism, relativism, and (contrary to our predictions) egoism. However, we also found that both Egyptians and Americans rely on justice, utilitarianism, and relativism in predicting their intentions to behave ethically, and that Americans substitute egoism for justice, when the behavioral intentions of peers are examined. (shrink)

In a compelling article, Peterson, Karlawish and Largent argue that supported decision-making is preferable to substitute decision-making for people with dynamic impairments. We fully...

Background: Research involving adults lacking mental capacity relies on the involvement of a proxy or surrogate, although this raises a number of ethical concerns. Empirical studies have examined attitudes towards proxy decision-making, proxies’ authority as decision-makers, decision accuracy, and other relevant factors. However, a comprehensive evidence-based account of proxy decision-making is lacking. This systematic review provides a synthesis of the empirical data reporting the ethical issues surrounding decisions made by research proxies, and the development (...) of a conceptual framework of proxy decision-making for research. Methods: A systematic review was conducted according to PRISMA guidelines. Databases including MEDLINE, EMBASE, and CINAHL were searched using a combination of search terms, and empirical data from eligible studies were retrieved. The review followed the framework synthesis approach to refine and develop a conceptual framework. Results: Thirty-four studies were included in the review. Two dimensions of proxy decision-making emerged. The ethical framing criteria of decision-making used by proxies: use of a substituted judgement, use of a best interests approach, combination of substituted judgement and best interests, and ‘something else’, and the active elements of proxy decision-making: ‘knowing the person’, patient-proxy relationship, accuracy of the decision, and balancing risks, benefits and burdens, and attitudes towards proxy decision-making. Interactions between the framing criteria and the elements of decision-making are complex and contextually-situated. Conclusions: The findings from this systematic review challenge the accepted reductionist account of proxy decision-making. Decision-making by research proxies is highly contextualized and multifactorial in nature. The choice of proxy and the relational features of decision-making play a fundamental role: both in providing the proxy’s authority as decision-maker, and guiding the decision-making process. The conceptual framework describes the relationship between the framing criteria used by the proxy, and the active elements of decision-making. Further work to develop, and empirically test the proposed framework is needed. (shrink)

I review the recent case of Edna Folz, a 73 year-old woman who was suffering through the end stages of very advanced Alzheimer's dementia when her case was adjudicated by the Wisconsin Supreme Court. I consider this case as an example of how courts are increasingly misinterpreting the ethical and legal decision-making standards known as substituted judgment and best interests and thereby threatening individuals' treatment decision-making rights as developed by other courts over the past two decades (...) and creating serious roadblocks to health-care providers' ability to render appropriate patient care. The Wisconsin Supreme Court held that Edna's legal guardian could not authorize withdrawal of Edna's treatment, ruling that as a matter of law, if an incompetent person is not in a persistent vegetative state, it is not in his or her best interests for life-sustaining treatment to be withdrawn unless (s)he has executed an advance directive or other statement clearly indicating his or her desires. (shrink)

Berger (forthcoming) states that moral intimacy is important in applying the best interests standard. But what he calls moral intimacy requires that someone has overcome epistemic burdens needed to represent the patient. We argue elsewhere that good surrogate decision-making is first and foremost a matter of overcoming epistemic burdens, or those obstacles that stand in the way of a surrogate decision-maker knowing what a patient wants and how to satisfy those preferences. Berger’s notion of moral intimacy depends (...) on epistemic intimacy: the fact that a surrogate's epistemic burdens with respect to the best interests of the incapacitated patient have been adequately surmounted, plus some other feature. Thus, where a particular patient-surrogate relationship fails to be morally intimate, what is lacking is either epistemic intimacy or this second feature. Furthermore, Berger uses the notion of moral intimacy as an explanans for the application of the best interests standard. We argue that the notions of epistemic intimacy and epistemic burdens not only help to explain the notion of moral intimacy, but also better explain the application of the best interests standard. Given the role of epistemic burdens and the epistemic intimacy that overcoming them enables, bioethicists and physicians should consider a surrogate’s epistemic standing relative to the patient’s best interests before pronouncing on the former’s ethical probity. (shrink)

The Mental Capacity Act received Royal Assent on 7 April 2005, and it will be implemented in 2007. The Act defines when someone lacks capacity and it supports people with limited decision-making ability to make as many decisions as possible for themselves. The Act lays down rules for substitute decision making. Someone taking decisions on behalf of the person lacking capacity must act in the best interests of the person concerned and choose the options least (...) restrictive of his or her rights and freedoms. Decision making will be allowed without any formal procedure unless specific provisions apply, such as a written advance decision, lasting powers of attorney or a decision by the court of protection. (shrink)

Background/Aim: The law on consent has changed in Scotland with the introduction of the Adults with Incapacity Act 2000. This Act introduces the concept of proxy consent in Scotland. Many patients in intensive care are unable to participate in the decision making process because of their illness and its treatment. It is normal practice to provide relatives with information on the patient’s condition, treatment, and prognosis as a substitute for discussion directly with the patient. The relatives of (...) intensive care patients appeared to believe that they already had the right to consent on behalf of an incapacitated adult. The authors’ aim was to assess the level of knowledge among relatives of intensive care patients of both the old and new law using a structured questionnaire.Methods: The next of kin of 100 consecutive patients completed a structured questionnaire. Each participant had the questions read to them and their answers recorded. Patients were not involved in the study.Results: Few were aware of the changes. Most thought that they previously could give consent on behalf of an incapacitated adult. Only 13% have ever discussed the preferences for life sustaining treatment with the patient but 84% felt that they could accurately represent the patient’s wishes.Conclusions: There appeared to be a lack of public awareness of the impending changes. The effectiveness of the Act at improving the care of the mentally incapacitated adult will depend largely on how successful it is at encouraging communication and decision making in advance of incapacity occurring. (shrink)

BackgroundSome people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life. When individuals lack decision-making capacity, the standard processes of obtaining informed (...) consent for medical interventions are disrupted. Increasingly multi-professional groups are being utilised to make difficult ethical decisions within healthcare. This paper reports upon a service evaluation which examined decision-making within a UK hospital Feeding Issues Multi-Professional Team.MethodsA three month observation of a hospital-based multi-professional team concerning feeding issues, and a one year examination of their records. The key research questions are: a) How are decisions made concerning artificial nutrition for individuals at risk of lacking decision-making capacity? b) What are the key decision-making factors that are balanced? c) Who is involved in the decision-making process?ResultsDecision-making was not a singular decision, but rather involved many different steps. Discussions involving relatives and other clinicians, often took place outside of meetings. Topics of discussion varied but the outcome relied upon balancing the information along four interdependent axes: Risks, burdens and benefits; Treatment goals; Normative ethical values; Interested parties.ConclusionsDecision-making was a dynamic ongoing process with many people involved. The multiple points of decision-making, and the number of people involved with the decision-making process, mean the question of ‘who decides’ cannot be fully answered. There is a potential for anonymity of multiple decision-makers to arise. Decisions in real world clinical practice may not fit precisely into a model of decision-making. The findings from this service evaluation illustrate that within multi-professional team decision-making; decisions may contain elements of both substituted and supported decision-making, and may be better represented as existing upon a continuum. (shrink)

The modern legal and ethical movement against traditional welfare paternalism in medical decision-making extends to how decisions are made for patients lacking decisional capacity, prioritising surrogates’ judgment about what patients would have decided over even their best interests. In England and Wales, the Mental Capacity Act 2005 follows this trend of prioritising the patient’s prior wishes, values and beliefs but the dominant interpretation in life-sustaining treatment cases does so by in effect calling those values the ‘best interests’ of (...) the patient and focusing nearly exclusively on the ‘subjective’ viewpoint of the patient. In this article, we examine the recent Court of Protection judgment inBarnsley Hospitals NHS Foundation Trust v MSP[2020] EWCOP 26, which adhered closely to this approach, to suggest that it could have unexpected negative consequences. These include insufficient information gathering about and attention to patients’ objective medical interests, inadequacy of the evidentiary standard used for the substituted decision-making and, in some cases, even prioritising a surrogate’s current substituted judgment over the potential for an actual judgment by the patient. (shrink)

When a patient lacks decision-making capacity and has not left a clear advance directive, there is now widespread agreement that patient-designated and next-of-kin surrogates should implement substituted judgment within a process of shared decision-making. Specifically, after discussing the “best scientific evidence available, as well as the patient's values, goals, and preferences” with the patient's clinicians, the patient-designated or next-of-kin surrogate should attempt to determine what decision the patient would have made in the circumstances. To the (...) extent that this approach works, it seems to provide about as much respect for the autonomy of incapacitated patients as we could ask for. But, as articles in this issue of the Report by Jeffrey Berger and by Ellen Robinson and colleagues emphasize, reality presents challenges. (shrink)

In many real-world gambles, a non-trivial amount of time passes before the uncertainty is resolved but after a choice is made. An individual may have a preference between gambles with identical probability distributions over final outcomes if they differ in the timing of resolution of uncertainty. In this domain, utility consists not only of the consumption of outcomes, but also the psychological utility induced by an unresolved gamble. We term this utility anxiety. Since a reflective decision maker may want (...) to include anxiety explicitly in analysis of unresolved lotteries, a multiple-outcome model for evaluating lotteries with delayed resolution of uncertainty is developed. The result is a rank-dependent utility representation (e.g., Quiggin, 1982), in which period weighting functions are related iteratively. Substitution rules are proposed for evaluating compound temporal lotteries. The representation is appealing for a number of reasons. First, probability weights can be interpreted as the cognitive attention allocated to certain outcomes. Second, the model disaggregates strength of preference from temporal risk aversion and thus provides some insight into the old debate about the relationship between von Neumann–Morgenstern utility functions and strength of preference value functions. (shrink)

Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative (...) descriptive design with analysis of the contents of transcribed in-depth interviews with relatives. Participants: Fifteen relatives of 20 patients in 10 nursing homes in Norway. Results and Interpretations: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives’ experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. Conclusion: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy. (shrink)

The Substituted Judgment Standard for surrogate decision-making dictates that a surrogate, when making medical decisions on behalf of an incapacitated patient, ought to make the decision that the patient would have made if the patient had decisional capacity. Despite its intuitive appeal, however, SJS has been the target of a variety of criticisms. Most objections to SJS appeal to epistemic difficulties involved in determining what a patient would have decided in a given case. In this article, (...) I offer an alternative standard for surrogate decision-making that avoids these difficulties. I then offer an account of its theoretical underpinnings which shows that it preserves the central moral justification for SJS, namely, respect for patient autonomy. (shrink)

In this issue of JCE, Douglas Diekema argues that the best interest standard (BIS) has been misemployed to serve two materially different functions. On the one hand, clinicians and parents use the BIS to recommend and to make treatment decisions on behalf of children. On the other hand, clinicians and state authorities use the BIS to determine when the government should interfere with parental decision-making authority. Diekema concedes that the BIS is appropriately used to “guide” parents in (...) class='Hi'>making medical treatment decisions for their children. But he argues that the BIS is inappropriately used as a “limiting” standard to determine when to override those decisions. Specifically, Diekema contends that the BIS “does not represent the best means for determining when one must turn to the state to limit parental action.” He argues that this limiting function should be served by the harm principle instead of by the BIS.I contend that we should not reassign the BIS’s limiting function to the harm principle. In this article I make two arguments to support my position. First, the BIS has effectively served, and can serve, both guiding and limiting functions. Second, the harm principle would be an inadequate substitute. It cannot serve the limiting function as well as the more robust BIS. (shrink)

Despite increased calls for hospital ethics committees to serve as default decision-makers about life-sustaining treatment for unrepresented patients who lack decision-making capacity or a surrogate decision-maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision-making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were (...) 310 ethics committee consultations, twenty-five of which involved unrepresented patients. In thirteen cases, the ethics consultants evaluated a possible substitute decision-maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgement, found prior advance care planning documents, or identified the patient’s best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST or to change code status to Do Not Resuscitate/Do Not Intubate. Substitute decision-makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in which physicians made the final decision. In our centre, the primary role of ethics consultants in decision-making for unrepresented patients is to identify appropriate decision-making standards. In the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision-makers for unrepresented patients, caution is necessary before designating these committees as default decision-makers. (shrink)

In combating the ongoing global health threat of the COVID-19 pandemic, decision-makers have to take actions based on a multitude of relevant health data with severe potential consequences for the affected patients. Because of their presumed advantages in handling and analyzing vast amounts of data, computer systems of algorithmic decision-making are implemented and substitute humans in decision-making processes. In this study, we focus on a specific application of ADM in contrast to human decision- (...) class='Hi'>making, namely the allocation of COVID-19 vaccines to the public. In particular, we elaborate on the role of trust and social group preference on the legitimacy of vaccine allocation. We conducted a survey with a 2 × 2 randomized factorial design among n = 1602 German respondents, in which we utilized distinct decision-making agents and prioritization of a specific social group as design factors. Our findings show that general trust in ADM systems and preference for vaccination of a specific social group influence the legitimacy of vaccine allocation. However, contrary to our expectations, trust in the agent making the decision did not moderate the link between social group preference and legitimacy. Moreover, the effect was also not moderated by the type of decision-maker. We conclude that trustworthy ADM systems must not necessarily lead to the legitimacy of ADM systems. (shrink)

Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better. Respondents in 90 family pairs rank-ordered 47 end-of-life statements as life-story narrative measure and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view and predicted pair’s view. They also scored their confidence (...) in surrogate’s decision-making and familiarity with pair’s healthcare-preferences. Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts and between respondent-surrogate and pair-personal Q-sorts before and after controlling for correlation with respondent-personal scores, and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity. Mean age was 35.4 years, 69% were females, and 73 and 80% reported ≥ very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 and 75% were ≥ familiar with pair’s healthcare-preferences. Mean projection, simulation, and adjusted-simulation correlations were 0.68, 0.42, and 0.26, respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score. There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts and percent agreement on healthcare-outcomes acceptability. Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background. (shrink)

Most of the work in agent-based social simulation has assumed highly simplified agent models, with little attention being paid to the details of individual cognition. Here, in an effort to counteract that trend, we substitute a realistic cognitive agent model (CLARION) for the simpler models previously used in an organizational design task. On that basis, an exploration is made of the interaction between the cognitive parameters that govern individual agents, the placement of agents in different organizational structures, and the (...) performance of the organization. It is suggested that the two disciplines, cognitive modeling and social simulation, which have so far been pursued in relative isolation from each other, can be profitably integrated. (shrink)

This discussion aims to give a normative theoretical basis for a “best judgment” model of surrogate decision making rooted in a regulative ideal of love. Currently, there are two basic models of surrogate decision making for incompetent patients: the “substituted judgment” model and the “best interests” model. The former draws on the value of autonomy and responds with respect; the latter draws on the value of welfare and responds with beneficence. It can be difficult to determine (...) which of these two models is more appropriate for a given patient, and both approaches may seem inadequate for a surrogate who loves the patient. The proposed “best judgment” model effectively draws on the values incorporated in each of the traditional standards, but does so because these values are important to someone who loves a patient, since love responds to the patient as the specific person she is. (shrink)

Research on environmental-decision making is usually based on utilitarian models, which imply that people's decisions are only influenced by the outcomes. This research provides evidence for values and moral positions that reflect nonconsequentialist rather than consequentialist views. In doing this, this article refers to “sacred values,” which are values that are seen as not-substitutable and nontradable. Two studies were designed to examine evidence for sacred values and their role on act versus omission choices within the environmental domain. The (...) studies revealed that sacred values were closely associated with preferences for actions, trade-off reluctance, deontological focus, and position of moral universalism. The results suggest that it is important to account for sacred values and nonconsequentialist views in environmental decision-making research. (shrink)

There are two contrasting views on the decision-making for life-sustaining treatment in advanced stages of dementia when the patient is deemed incompetent. One is to respect the patient's precedent autonomy by adhering to advance directives or using the substituted judgement standard. The other is to use the best-interests standard, particularly if the current judgement on what is best for the incapacitated patient contradicts the instructions from the patient's precedent autonomy. In this paper, I argue that the protracted clinical (...) course of dementia over many years requires the extended perspective of a progressive decision-making process—extended in both social space and time. The ongoing debate between these two competing views has missed this perspective by focussing on an exclusive disjunction between the competent former self and the incompetent current self. Drawing on theories of situated cognition in cognitive science, I will show that the cognition of a demented patient can be viewed as extended and embodied by her supportive social environment. As the disease progresses, the content of the mind of a demented person becomes partially constituted by such external resources along with her diminishing intrinsic mind. With this understanding, medical decision-making for a demented patient can be construed as a temporally and socially extended practice. A collective decision-making body consisting of the patient, her family and surrogates, and the clinician, should make progressive decisions as a whole over years of the disease course. Finally, I will provide a practical example of how this proposal can be applied in clinical practice. (shrink)

Surrogate (proxy) decision makers must make research decisions for people with dementia who lack decision-making capacity. Proxies’ decision-making processes are minimally understood. We randomly assigned 82 proxies of AD patients to informed consent for one of three hypothetical protocols with differing levels of risk and benefit. Proxies answered questions about potential benefits of the described research to the patient and society, as well as about whether they would enroll their relative and why or why not. (...) Proxies interested in enrolling their relative cited the potential for direct benefit to their relative, altruism, and trust in researchers. Those declining cited risks, inconvenience, and stage of illness. Proxies weighed numerous factors, incorporating both substituted judgment and best interests standards in their decision-making processes. Although further empirical work is needed to understand the influences on and adequacy of proxies’ decision making regarding research, these findings can help inform policy regarding surrogate consent. (shrink)

This paper will discuss why and how social network sites ought to be used in surrogate decision making (SDM), with focus on a context like Singapore in which substituted judgment is incorporated as part of best interest assessment for SDM, as guided by the Code of Practice for making decisions for those lacking mental capacity under the Mental Capacity Act (2008). Specifically, the paper will argue that the Code of Practice already supports an ethical obligation, as part (...) of a patient-centred care approach, to look for and appraise social network site (SNS) as a source of information for best interest decision making. As an important preliminary, the paper will draw on Berg’s arguments to support the use of SNS information as a resource for SDM. It will also supplement her account for how SNS information ought to be weighed against or considered alongside other evidence of patient preference or wishes, such as advance directives and anecdotal accounts by relatives. (shrink)